used to be type 1

[robinhood75]

hi,feeling down dont know what to do next.then i came across this forum thought maybe i could get some help.
iam a 40 year old guy who was diognosed with type 1 diabeties back in 1997 at 22 years of age 5ft 9 in hight of average build.after many years of struggling with my blood sugar levels attended a carb counting course at my local hospital which helped alot but i felt there was something not right but with all the ups and downs of being diabetic i just carried on as normal.since diognisis id put on weight slowly over the years.then one day my wife decicded to loose some weight,so to support her and loose some weight myself i started the diet. as the months went by as the weight came off my insulin requirements went down and down until i was hardly taking anything 1.5 lantus and 2 - 4 humalog.Then on my next hospital review my consultant happy with the loss in weight and hardly injecting any insulin decided to test if i was still making any insulin which was unbelivable i was supposed to be type1.results came back positive i could not get my head around it.consultant put me forward for mody testing.after a few weeks waiting for the results struggling with my sugars on hardly any insulin asked if i could try gliclazide.consultant agreed i could try them.wow they worked after years of injecting and feeling there was something not quite right i had got my answer i was still producing my own insulin.After a couple months later my results came back from exeter inconculsive they couldant find any known gene mutations.so i was no longer a type 1 or mody diabetic.my consulant also said i was none of the other types of diabeties either.Carn't help thinking mybe should i have been diognosed with type 2 back in 1997 even though i didant fit the criteria.iam know i should be over the moon but i carn't help feeling like a freak.has anybody had the same experiance i can share with and shed any light.

 

[desidiabulum]

Hi. There are more diabetics who don't fit the criteria than you think. Just because Exeter couldn't find any known gene mutations doesn't mean that you don't have MODY -- they are finding new mutations all the time. My diabetes clinic has stuck with the MODY diagnosis even though they cannot tie it to a known genetic mutation -- I was diagnosed as 'MODY?', then 'MODY X', and now 'HNF1 negative' (which still just means they don't know).
I still think you should be over the moon at not being T1.
You have a dysfunctional pancreas, and the key is just keeping those BGs low and stable. Don't worry about what to call it -- just focus on the treatment that works for you. Good luck!

 

[robinhood75]

hi,thanks for your reply.a miricale has happend but struggling to get my head round it all.
My consultant has told me that i carnt class myself as mody because ive not got one of the known genes.As you say they are finding new genes all the time.hopfuly theyll find one for me.
In the mean time ive got to get on with it on just get the right treatment

 

[robinhood75]

No diabetes in the family apart from mother who has been diognosed with type 2.No diabetes in grandparents

 

[Gaz-M]

Ive got to have the same tests done as far as I,m aware (I find out on the 23rd of this month) after being type1 for 43 years, all I want is answers and results, get it over wth and get back to a routine

 

[robinhood75]

hi,how did you and your doctor come to the conclusion to start testing for mody.have you lost alot of weight resently and how much insulin are you on?Have you always felt there was something not right?sorry about all the question as you don't very often come across anybody with the same condidtion as me.I had to wait about four months before i got my mody test results back due to the fact they could not find any of the known faulty genes.This has left me feeling like an alien or very special.family say i'm one in a million haha

 

[martsnow]

I have to agree with previous posters, It is no use worrying where the diabetes has come from or what caused it. We cannot go back and change the past. We can only start with today and plan for the future. It is far more important to concentrate on where you are and the treatments that are available to you be it medicinal or dietary. It is only through doing this that you can help, modify or delay any medical problems that are associated with the diabetes.

Having said all this if you are planning on having children, then I can understand your interest in genetic markers, and if they are carried on a dominant or recessive gene

Good luck

 

[Gaz-M]

The doctor only wanted to test me as I was diagnosed in 1972 and said I have all the charateristics of a type 1, so a suprise to say the least when I was told what the results where from people on here. I'm not really bothered ( unless it affects my children more) what type I will be classed as and may well still be type1